Relational knowledge and young people’s cancer care: how community-based participatory research promotes learning and directs action in practice

Abstract

ABSTRACT This paper reflects on the dynamic of co-developing knowledge within a Community-Based Participatory Research (CBPR) project in the UK that set out to direct teenage and young adult Ambulatory Care. This is a service that offers cancer treatment that would have once required inpatient hospital stays. Working within a Community-of-Inquiry (CoI), young people from this cancer community became co-researchers, participating in every phase of the qualitative research. This contribution is written from the perspective of two members of the CoI, Alison, a cancer researcher-practitioner, and Michela, a young associate researcher with lived experience of cancer. Drawing on the Ambulatory Care research as a case study, they offer a reflective account of involving young people in research that directs both action and participatory action research processes. In doing so, they engage in a critical exploration of their participatory research inquiry, contextualising their discussion with some of the extant literature relevant to their chosen CBPR approach. The researchers found that both Ambulatory Care and their research dynamic foster young people’s agency. Evident too, was that within research that prioritises relationships and knowledge democracy and which associates with a sense of the collective, individuality can also sit comfortably alongside. The authors conclude this that distinctiveness is a strength, which enhances the learning, criticality, and reach of engaged research inquiry.